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Disability as the Driving Subject of Inquiry

An Orientation Paper

The Disability Matters research programme aspires to transform health research and environments through a paradigm shift; from disability as problem to disability as the driving subject of inquiry. Established fields such as medicine, medical humanities, health psychology, medical sociology, population and public health studies conventionally understand disability as a problem requiring a solution. Research emerging from these fields renders disability as an object of inquiry. This is true even within everyday life where disability is understood as an unfortunate happenstance requiring remedy. Disability Matters proposes a paradigm shift: rather than conceiving of disability as the passive object of inquiry, we understand disability as the driving active subject of inquiry. 

This paradigm shift includes and involves the development of anti-ableist and anti-disablist approaches to research and scholarship. This leads to a broadening of health research priorities and the cultivation of innovate research methodologies. A further consequence of paradigmatically shifting disability to the driving subject of inquiry is the promotion of inclusive research environments, as well as the encouragement of more vital disability representations. Just as important, is that the paradigm shift values the development of a new generation of disabled and disability-focused health researchers. Our programme of work aims to generate transformative knowledge pertaining to equity, diversity and inclusion. And our proposed paradigm shift aims to support Wellcome’s strategy to lead the science and health sector in challenging the processes of ableism and disablism in the practices and cultures of health research. We understand ableism as the presumption and idealisation of able-bodied-and-mindedness and disablism as the oppression of people with impairments.

We require creative researchers and collaborators in order to shift away from the conventional paradigm of disability as an object of research. We therefore turn to the experiences and ambitions of disabled people – and the scholarship of disabled researchers - to rethink how we research health and well-being. By turning to the possibility and potential of disability, we set up a number of challenges to our colleagues in the established fields outlined above. We also seek to critically engage our colleagues who are already engaged with disability as their primary concern: to enhance the field of disability studies especially in relation to its engagement with life, health and well-being. 

As is often the case, especially with studies of disability, we start with a problem. Unlike traditional medical, administrative and psychological approaches, which constitute disability as the objective problem requiring a solution, we understand the problem differently. Many researchers and scholars - from the established disciplines referred to above - often ignore disability, treat disability as a passive object of intellectual curiosity, empirically investigate disability as a chronic illness or understand disability in terms of impairment or pathology. Disability exists as an ‘absent presence’, as a present problem to be solved by research but absent as a research colleague or scholarly authority. Disabled health researchers and theorists are conspicuously absent. Medical sociology typically talks around rather than about disability  and frames discussions in terms of social deviance rather than social oppression. Medical humanities scholars tend to focus on medical ethics, knowledge and practice and risk ignoring how disability is constituted in a number of other social, cultural and institutional locations. Recent iterations of medical humanities that engage more broadly with health humanities still frame disabled people primarily as passive recipients of healthcare and objects of bioethical debate. Biomedical and pharmacological interventions risk pathologising disability by treating disability merely as an object of intervention. And even when disability is included as an object of study, health research often ignores the specificities of disabled people’s lives and the health inequalities that they endure as a consequence of disabling systemic factors. Disability Matters shifts us towards a paradigm that values disability’s promise and potential for revitalising theory, policy and practice.

In seeking to address our problem - the absent presence of disability - we draw from the field of disability studies. Over the last three decades distinct models of disability and communities of disability scholars have grown, in various national contexts, emphasising disability’s minority status (North America), socio-economic foundation (United Kingdom), cultural location (Australia and North America), relational constitution (Nordic countries), bio-psycho-social character (supranational perspectives such as World Health Organisation and United Nations) and colonial imprints (including Africa, Asia and South America). These approaches were created as alternatives to dominant psychological and medical models that individualise the lives of people with sensory, physical and cognitive impairments.  Disability is cast as both subject and object of intellectual interrogation and many disability scholars adhere to the leitmotif of the disabled people’s movement - ‘nothing about us without us’. And yet while the field of disability studies has matured and evolved in many exciting ways there is still a sense that disability resides at the edges of the dominant and established fields of inquiry (such as medical humanities, medical sociology, health psychology, population and public health). In time we will revisit, rehearse and dissect a number of explanations for this peripheral status of disability studies. For now, let us return to our problem: disability’s absent presence.

Even within some of our disability studies communities it feels as if disability is neither here nor there. In the UK, for example, the social model of disability tends to dominate intellectual and policy landscapes. The quintessential goal of the social model is the eradication of disability. If, as the social model suggests, disability is the consequence of inappropriate societal responses to impairment, then the development of appropriate responses would necessarily eradicate disability. The social model accepts that impairment will always exist: framed negatively in terms of the consequences of ill-health, poverty, war and conflict. Still, the work of the social model is oriented towards identify and eradicating responses such as discrimination and oppression: we are encouraged to talk about the social barriers that create disability while we talk around impairment (if indeed there is any talk of this at all).

Disability and impairment both appear and then disappear in the social model. Disability is eradicated while impairment is marginalised, side-lined and ignored.  The irony is that disability’s antithesis (ability) is in danger of always being reproduced by the social model. This social conception of disability appeals to the idea and ideal that a barrier-free world will release our human potential. This is an Enlightenment model; suggesting some kind of standard human just waiting to be released. Without social barriers; the human will reappear. Without barriers; all humans turn up. And yet, this imagined and idealised emancipated human is implicitly assumed to be the standard human and standards humans tend not to be disabled but able-bodied-and-minded. The social model conceives of the emancipated human as non-disabled since removing barriers to disabled people removes disability itself. Moreover, the social model moves impairment from disability into the realm of biology thus making it irrelevant to any social or research interest other than the natural sciences and psych-disciplines.  

Any version of removing or disappearing disability risks dissolving both disability and disabled people into the greater social whole. Failing to sit with (and reflect upon) disability, impairment or all forms of human difference, risks ignoring the generative differences that these differences make in the world. Failing to attend to the active presence of disability and human difference means that only standard humans will continue to proliferate in our research and scholarship. 

This leads us to ask: what generative possibilities are released when we support disability – as a form of human difference -  to make a difference as the driving force of inquiry? What would this form of inquiry mean and entail? What would this inquiry’s impact be on the health sciences and the kind of work that researchers and scholars engage in? In other words, if inquiry involves trying to make sense of the human condition then what does disability offer to this inquiry?  We seek to develop modes of inquiry that are driven by the promise of disability as a phenomenon that is omnipresent and resistant to disappearances. We understand disability as a noun but also as a verb: as an exemplar of human praxis.

Rarely is disability conceived of as human praxis: in terms of its theoretical and practical promise to ponder what it means to be human. In recent years, critical disability studies has produced more affirmative readings of disability often engaging with a host of intersectional identities, including black, working class, crip, indigenous, feminist, LGBTQ+ and inclusive, too, of Global Southern perspectives. The most profound health inequalities are located within the intersections of these identities intersect. Critical disability studies engages these intersections through an  understanding of disability as an axis of inequality, a cultural category, a politicised identity, an embodied as well as a phenomenon holding the potential to disrupt the  normative order. By understanding disability as human praxis we attend to the promise of disability to inform research to transform life, health and wellbeing. 

One response to the absent presence of disability is to reorient ourselves to disability as the driving subject of inquiry. This re-orientation occurs at an interesting moment in the history of disability theory. One such development relates to the identification and separation of ableism (the presumption and idealisation of able-bodied and mindedness) and disablism (the oppression of people with impairments). As organisations such as Wellcome seek to interrogate their exclusionary practices we note the problematic ways in which ableism and disablism are used interchangeably; without reference to the different ways in which these practices and ideologies manifest themselves in our everyday lives. Furthermore, when Wellcome and other organisations in the science and health arena seek to include disability we need to consider disability is being included a problem to be rectified or as a phenomenon full of promise and possibility for human praxis that can inform cultural change. In this sense then Disability Matters calls for a new science of being human: where disability is the conversation starter for all matters of research and innovation including scholarship, research methodology, research environments, representations and research training. Our programme responds to Wellcome’s strategy to support research that informs life, health and well-being.

Disability Matters seeks to move disability studies scholarship and theory from the periphery of the fields of medical humanities, medical sociology, health psychology into their centre. This does not involve simply incorporating conceptions of disability into these fields but instead asking - how might the subject of disability change how these fields go about their business? Disability invites an opportunity for Wellcome and others in the science and health sector to consciously and communally recreate ourselves: being human as praxis. Our research programme seeks to change a number of aspects about these fields of inquiry through delivering on a number of ambitious expected outcomes which also understanding as the orienting goals of Disability Matters:

1. Intellectual transformation in health research scholarship through a critical engagement with critical disability studies and the expertise of disabled people.
2. Pan-national understanding of the common and differential health priorities of disabled people across four continents.
3. Transformation of health research methods to ensure the meaningfully inclusion of disabled people as researchers and participants.
4. Promotion of more inclusive health research environments, cultures and systems through a focus on disability and other protected characteristics.  
5. Reframing the representation of disability in healthcare research, dissemination and public engagement.
6. Raising the capacities of disabled and disability-positive early career health researchers.
7. Generating transformative equity, diversity and inclusion knowledge that supports Wellcome’s strategy to lead the sector in challenging ableism and disablism in the practices and cultures of health research.

New references
 

Goodley, D., Lawthom, R., Liddiard, K., & Runswick-Cole, K. (2020). The Desire for New Humanisms, Journal of Disability Studies in Education, 1(1-2), 125-144. doi:

Henri Jacques Stiker (2019). A History of Disability. Second Edition. Chicago: University of Michigan Press. 

Michalko, R. (2002). The Difference That Disability Makes. Philadelphia: Temple University Press.

Tanya Titchksoky, Elaine Cagulada, Madeleine DeWelles and Efrat Gold. (Eds). (2022). DisAppearing Encounters in Disability Studies. Toronto: Canadian Scholars

Wynter, S. and McKittrick. (2015). Unparalled catastrophe for our species? Or, to give humanness a difference future: Conversation. In K.McKittrick (Ed). Sylvia Wynter: On Being Human as Praxis. Durham and London: Duke University Press.

Wynter, S. (2003). ‘Unsettling the Coloniality of Being/Power/Truth/Freedom. Towards the Human, After Man, Its Overrepresentation – An Argument.’ CR: The New Centennial Review,&�Բ�����;3(3),&�Բ�����;257–337.

Wynter, S. (2006). ‘On How We Mistook the Map for Our Territory, and Re-Imprisoned Ourselves in Our Unbearable Wrongness of Being, of Desetre.’ In Gordon Lewis R. and Anna Gordon Jane (Eds). Not Only The Master’s Tools: African-American Studies in Theory and Practice. Boulder: Paradigm Publishers. (pp. 107–169).

Original References and bibliography of research proposal

1. Thomas, C. (2007) Sociologies of Disability and Illness. London: Palgrave.
2. Blume, S, Galis, V. & Pineda, A.V. (2014) ‘Introduction: STS and Disability’, Science, Technology & Human Values, 39(1), pp. 98–104.
3. Stoddard Holmes, M. (2015) Embodied Storytellers: Disability Studies and Medical Humanities. Hastings Center Report 45(2), 11–5.
4. Gibson, B. E. (2016) Rehabilitation: A Critical Approach. Boca Raton: CRC Press
5. Titchkosky, T. (2011) The Question of Access. Toronto: University of Toronto Press.
6. Thomas, G. (2021). A legacy of silence: the intersections of medical sociology and disability studies. Medical Humanities Epub ahead of print.
7. Mauldin, L. & Lewis, R. (2021) Missing Pieces: Engaging Sociology of Disability in Medical Sociology. Forthcoming in Journal of Health and Social Behavior.
8. Herndl, D. P. (2005) ‘Disease versus Disability: The Medical Humanities and Disability Studies’, Publications of the Modern Language Association of America, 120(2), 593–598.
9. Jones, T et al. (2017) ‘The Almost Right Word: The Move From Medical to Health Humanities’, Academic Medicine, 92(7), 932–935.
10. Couser, T.G. (2011) What Disability Studies Has to Offer Medical Education, The Journal of Medical Humanities, 32(1), 21–30.
11. Galis, V. (2011) ‘Enacting disability: how can science and technology studies inform disability studies?’, Disability & Society, 26(7), 825–838.
12. Goodwin, D et al (2004) Reactions to the Metaphors of Disability: The Mediating Effects of Physical Activity. Adapted Physical Activity Quarterly, 21, 379 - 398.
13. Ginsburg, F. & Rapp, R. (2013) Disability Worlds, Annual Review of Anthropology, 42(1), 53–68.
14. Meekosha, H & Shuttleworth, R. (2009). “What’s so ‘critical’ about Critical Disability Studies?” Australian Journal of Human Rights 15(1), 47–75.
15. Goodley, D. (2012) Dis/entangling Critical Disability Studies. Disability & Society, 27(6), 631–44. 
16. Goodley, D. (2016) Disability Studies. 2nd Ed. London: Sage.
17. World Health Organization & The World Bank. (2011) World Report on Disability. Geneva: WHO.
18. Schwabe C.W. (1984) Veterinary Medicine and Human Health. Baltimore: Williams & Wilkins.
19. Shakespeare, T. (2013) Disability Rights and Wrongs Revisited. London: Routledge. 
20. Durst, D et al (2006) Urban First Nations People with Disabilities Speak Out. Journal of Aboriginal Health, 3(1), 34–43.&�Բ�����;
21. McRuer, R. (2006) Crip Theory. New York: New York University Press.
22. Kafer, A. (2013) Feminist Queer Crip. Bloomington: Indiana University Press.
23. Dunhamn, J et al (2015) Developing and Reflecting on a Black Disability Studies Pedagogy: Work from the National Black Disability Coalition. Disability Studies Quarterly, 35(2).
24. Grech, S., Soldatic, K. (2016) Disability in the Global South. New York: Springer.
25. Taylor, S. (2017) Beasts of burden: Animal and disability liberation. New York: New Press.
26. Van Trigt et al (2016) Humanity as a Contested Concept: Relations between Disability and ‘Being Human’, Social Inclusion 4(4), 125–128.
27. Wolbring, G. (2008) The Politics of Ableism, Development 51(2), 252–8. 
28. Goodley, D. (2014) Dis/ability Studies. London: Routledge.
29. Ghai, A (2003) n. New Delhi: Har-Anand. 
30. Scully, J.L. (2008). Disability bioethics. London: Rowman & Littlefield Publishers.
31. Goodley, D et al (2019) Provocations for Critical Disability Studies, Disability & Society, 34(6), 972-997.
32. Wong, M. E., & Lim, L. (2021). Special needs in Singapore.Singapore: World Scientific.
33. Charlton, J. (2000) Nothing about us without us. Berkeley: University of California Press.
34. Wellcome Collection (2021) Nothing ��«Ӱҵ Us Without Us: Online Seminar, 22June 2021.
35. United Nations (2020) A Disability-Inclusive Response to COVID-19. NY: United Nations.
36. Hogan, A et al (2020) Disabled people say ‘Nothing about us without us’, The Clinical Teacher, 17(1), 70–75.
37. Wilber, N et al (2002) Disability as a public health issue: findings and reflections from the Massachusetts survey of secondary conditions. The Milbank Quarterly, 80(2), 393–421.
38. Ryan, F. (2020) Crippled: Austerity and the demonization of disabled people. London:Verso.
39. Sakellariou, D et al (2020) ‘Disability inclusiveness of government responses to COVID-19 in South America: A framework analysis study’, International Journal for Equity in Health, 19(1), 131–131.
40. Bickenbach, J. E, Cieza, A & Sabariego, C. (2016). Disability and Public Health. International Journal of Environmental Research and Public Health, 13(1), 123. 
41. Shakespeare, T et al (2021) Disabled People in Britain and the Impact of the COVID-19 Pandemic. Social Policy and Administration, preprint.
42. Shakespeare T and Kleine I. (2013) Educating health professionals about disability: a review of interventions. Health and Social Care Education, 2(1), 20–37.
43. Shankar, R et al (2020) Epilepsy, an Orphan Disorder within the Neurodevelopmental Family. Journal of Neurology, Neurosurgery and Psychiatry, 91(12), 1245-1247.
44. Williams, A. S. & Moore, S. M. (2011) Universal Design of Research: Inclusion of persons with disabilities in mainstream biomedical studies. Science Translational Medicine, 3(82).
45. Meera, J. & Nisker, J. (2020) Need for Prominent Core Curricula Designed and Taught by Persons With Disabilities in All Levels of Medical Education. Canadian Journal of Disability Studies 9 (5), 245-64
46. Busfield, J. (2017) The Concept of Medicalisation Reassessed, Sociology of Health & Illness, 39(5), 759-74.
47. Mills, C. (2014) Decolonizing Global Mental Health. London: Routledge.
48. Williams, S et al. (2011) ‘The pharmaceuticalisation of society? A framework for analysis’, Sociology of Health & Illness, 33(5), 710–725.&�Բ�����;
49. Williams, O. et al (2020) Lost in the shadows: Reflections on the dark side of co-production. Health Research Policy and Systems, 18, 1-10.
50. Oliver, M. & Barnes, C. (1997) All we are saying is give disabled researchers a chance, Disability & Society, 12 (5), 811–813.
51. Stone, E. & Priestley, M. (1996) ‘Parasites, Pawns and Partners: Disability Research and the Role of Non-Disabled Researchers’, The British Journal of Sociology, 47(4), 699–71.
52. Walmsley, J., & Johnson, K. (2003). Inclusive research with people with learning disabilities: Past, present and futures. London: Jessica Kingsley Publishers.
53. Balcazar, F. E & Suarez-Balcazar, Y. (2016) ‘On Becoming Scholars and Activists for Disability Rights’, American Journal of Community Psychology, 58 (3-4),251–258.
54. Brown, N. & Leigh, J. (2018) Ableism in academia: where are the disabled and ill academics?, Disability & Society, 33(6), 985-989. 
55. Black, W. (2021). Leadership beyond Ableism. UCEA Review, 63 (1-2), 1-11.
56. Liddiard K, et al (2019) I was Excited by the Idea of a Project that Focuses on those Unasked Questions: Co-Producing Disability Research with Disabled Young People. Children and Society, 33(2), 154-167.
57. Brown, N. & Leigh, J. (2020) Ableism in Academia: Theorising experiences of disabilities and chronic illnesses in higher education. London: UCL Press.
58. Woolston C. (2020) Fewer US researchers are disclosing disabilities on NIH grant applications. Nature, doi: 10.1038/d41586-020-00887-8.
59. Moody, J. & Aldercotte, A. (2020) Equality, diversity and inclusion in research and innovation: international review. [pdf] Commissioned by UKRI. 
61. Russell Group (2020). Realising our potential: Backing Talent and Strengthening UK Research Culture and Environment. London: The Russell Group. 
62. Nair, A. (2020a) Wellcome Collection.
63. Nair, A. (2020b) Wellcome Collection.
64. Frazee, C. (2009) Media Review: Disability in Dangerous Times. Journal on Developmental Disabilities, 15(3),118- 124.
65. Sivananthan, S. N & Chambers, L.W (2013) A method for identifying research priorities for health systems research on health and aging, HMF, 26(1),33–36.
66. Robert, C. & Zeckhauser, R. (2011) ‘The methodology of normative policy analysis’, Journal of Policy Analysis and Management, 30(3), 613–643.
67. Grue. J. (2016). Disability and discourse analysis. London: Routledge.